What People Living With Chronic Illnesses Think But are Sometimes Afraid To Say

 

I’ve only lived with Fibromyalgia for just over three years now – at least, with the diagnosis of it. I will say one thing about that ~ knowing what had been ailing me for a lot longer than just the past three years did help. It helped to know I wasn’t crazy (totally) and just imagining it. But it had been lurking there – right under the surface – for a lot of years. It also is probably a BIG PART of the other stuff I have contended with in life – we just didn’t know what to attribute it all to before the diagnosis.

What did rear its ugly head early on in my life, however, has been depression and anxiety. Chronic. Life long. And I don’t like to talk about it sometimes, but it’s the truth and I have to be honest with you. I’ve lived with my own sort of depression (and anxiety)- mostly chemically/hormonally/biologically driven – for the better part of my life. I am fifty years old, by the way.  That’s a long time. Don’t feel sorry for me about it – there’s a point to this story that’s about something much bigger than that.

I know it for what it is – I no longer buy into the stuff that others, including myself used to tell me about that second part of things. I will say it over and over again until the day that I die – when it comes to depression or anxiety, there are two MAIN kinds. The kind that is about perspective, attitude, outlook, behaviors – (semi-controllable with life changes) and the kind that is chemically driven (not so much controllable). I have both, but mostly the second kind is what takes me over sometimes. Yes. The two can co-exist. Yes – it’s hard for those around us to see which one you can do something about and which one is beyond your control.

It’s the same way with Fibro and the way it manifests itself (mostly invisibly) in your life.

I’ve learned one thing throughout all of this – but it doesn’t mean that I’ve perfected living it out. Feeling like we have to hide it from the world is still VERY PERVASIVE in our society. And I get that. I do. It sucks, but I understand it. It’s all about not being able to understand something if  you don’t go through it yourself. We are only human.

So, here is a PARTIAL list of things that I suspect most people who are struggling with chronic illness, chronic pain, chronic depression or anxiety or a host of other chronic things that make them “different” than who they really are inside, would like to say.

I share this with the heart of letting you know, that although there are some of us that do not feel this way, many of those I have met that struggle with things like this DO feel this way. We may tell those in our near and dear circle these things, but often we don’t feel that you truly believe us. More often, you hear us, but it just doesn’t STICK, because life clutters stuff up, man. And we are SO BUSY managing our chronic-whatever, (IT’S A FULL TIME JOB), that things like this – things that need to be said over and over and over again in order to stick, well – they get lost.

So, here we go:

Most of us realize that life is not all about us. Most of us deal with a lot of guilt when we think about how much worse things could be and we find ourselves crying in our Cheerios about our own situation.

Most of us feel selfish for having to focus so dang much on ourselves. Yet, we don’t know what to do, because we HAVE TO think about our situation so much – especially if we have chronic pain. There’s no where to run and little distraction from something like that. At least, there’s none that is lasting for much longer than a small stretch at a time.

Most of us were not always this way – it may have always “been there”, but we used to be able to do more things, have more good days than bad, and be more focused on others. Our whole lives didn’t used to always revolve around our illness and managing it. You probably remember that too.

Most of us still remember what it was like before. And we are in the cycle of grief. We know that you are too.

Most of us know this is hard on you. We know that we know that we know. And we feel responsible, even though it’s not “our fault.”

Most of us know that you have your own problems – some of them big ones- too. We want to be there for you. We want you to know that we get it – that you matter to us.

Most of us feel we are alone to a certain extent. Even when you help us – even when we pray. We KNOW we are not alone, but we FEEL alone. A lot.

Most of us realize there is a fine and messy line between knowing when it’s time to fight and when it’s about growing in surrender. That is very hard to discern. Why wouldn’t it be even HARDER for YOU to discern when you aren’t living in this skin? We get that.

Most of us feel pressure to act/deal with/look at things the way that those closest to them would want for them to. We try to look up, but sometimes, we just can’t. Then we feel like we have let you down. Again.

Most of us know that you are doing the best that YOU can in the face of this. We actually appreciate all the grace you extend to us, but feel bad about it all at the same time. It’s easy to say “it’s okay” but sometimes, we can’t help but think we are nothing but a pain in your butt. It’s part of the deal, man. We need lots of reassurance.

Most of us still find ourselves just wanting to be understood and to be sure you know we understand you as best we can. We also realize that part of surrender is giving that all up. That is H-A-R-D.

Most of us would snap our fingers and move this out of our lives (and out of YOUR life) in a hot second if we could.

Most of us want to do more for you and have the center of our lives be ANYTHING other than managing this junk. We are sick of ourselves. And that makes us even more sick. Dig it, man.

Most of us feel lost, even when we press in to God. We are reeling, spinning, and doing our best to try or not try – depending upon where we are at. We aren’t comfortable living in our own skin – but we keep trying to keep perspective in the midst of the fog of it all. For us, for you. For everybody’s sake.

Most of us feel all the same pressures as “normal” people have, along with knowing we must dedicate a lot of hours to managing this crap – we feel like failures and losers, even when we know it isn’t true. We know we are not martyrs, and that there are starving children digging through dumpsters in the world. We don’t want to try to explain our illness and situation to you in order to make you feel we are “one-upping” your problems- rather, we find ourselves desiring SO DEEPLY to help you understand. Not just for our sakes, but for YOURS.

Most of us finally shut down and stop sharing our feelings because when we see that it can’t be understood and it doesn’t help much to explain, that’s what we feel we need  to do for everyone’s sake.

Most of us know it’s more about surrender than fighting. You can’t know that until you are living in our shoes. You just can’t. It may look like we are giving up, when we are “practicing” surrender. It’s a process, yo. We don’t know how to do it any better than the next guy would.

Most of us try 99 percent of the time to keep perspective and look at the upside. But we have days where we can’t see straight, even when we turn our eyes upward. We know it hurts you when we share with you on those dark days – and yet….we feel we need to speak to someone who loves us about all of it.

Most of us would give anything to jog again, have a clear head again, and be able to hold a convo with you that’s all about YOU and NOTHING about our illness.

Most of us know that our identity SHOULD NOT be defined by our illness, but that so much of our lives are spent managing it, that gets murky and muddy too.

Most of us know you miss the old us. Newsflash: We do too.

Finally, most of us know that the world does not revolve around us, and that this completely sucks for everyone involved in our lives. But we have to hang on to the fact that God has a purpose in everything – that He is teaching not only us through this ugly hot mess, but that He may be trying to teach others in our circle a few hard truths  as well.

We often laugh at ourselves, because in some ways, we feel like test subjects. We are reminded thousands of times a day of what failure looks like, and we have to WORK HARD to keep that in perspective and realize that what looks like failure (not being able to have any stamina, having to lay in our bed to protect our bodies and minds so that we can be productive for the 6  hours a day that we can, saying too much when we are in a very dark and unreasonable place mentally, crossing the line between managing our chronic condition and letting it define us and take us over), is just topical.

It’s what is inside our hearts that matters. Truly. It isn’t what impacts the world around us right away – all the junk likes to take on that role. But it IS what truly matters.

So, if you live with someone or around someone who struggles in these ways, please know that as much as we can, we get it. We don’t want to be a burden to you. But MOST OF US are fighting against completely shutting down to “protect” you.

Most of us want to be real with you, yet let you know that we are okay.

Most of us know that you miss us. That’s not lost on us. But please know, that although this has changed us on the outside into something that can seem MONSTROUS and UGLY the vast majority of the time – if you look a little deeper, you just may find that the inside is being transformed into something of beauty.

And we want to share THAT with you too. You see – we get to understand something now (so do you) and use that for the glory of God!

So I will leave you with this verse. If you ever feel lost, not sure what to do with your chronic friend or family member – not knowing whether you are helping or not…remember this one thing, if nothing else. It’s all worth it if we use this to comfort others in the name of Jesus.

It’s all worth it.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 2 Corinthians 1: 3-4

 

 

 

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